Author Topic: Overwhelmed (Read 10218 times)

ColoradoSkiFanatic · « **on:** November 24, 2014, 11:26:45 am »

Hi all.

First of all thanks to everyone for contributing to these forums. It’s helpful to know that I’m not alone and there are such compassionate people out there willing to help.

I tested positive about 10 days ago and struggling to keep it together. So many questions, fears, worries. I can’t understand how it happened… when I was single, I was always so careful, even to the point of paranoia. Never, ever failed to use condoms, and never partied to the point where I was out of control enough to let my guard down. I was tested occasionally but not exactly on a regular 6 mo schedule, which I know I should have done. Then I met my partner, and gradually things got serious and we started having unprotected sex which was almost a foreign concept to me. Fast forward 16 years, and things are seeming perfect… stable, happily partnered, both with great jobs, daughter just leaving home for her freshman year at Colorado State University. We’re set to enjoy our first winter as empty-nesters… ski every weekend, and just enjoy the life that we’ve built together.

Then about a month ago I started to feel bad… aches, fatigue, headache. At first I think it’s just the flu or something, or maybe stress from my job. But something wasn’t right… worst fever I’ve ever had, and night sweats. After a week or so I’m mostly back to normal, and I might have just blown it off, but I just have this feeling… so I get tested and it comes back positive. I was in total shock. How could I be carrying this around for 16+ years and not know it? Is it now too late for me to benefit from all the treatments that are available these days? Am I a ticking time bomb? Will I get seriously ill soon? I feel worthless, ashamed, stupid. And the guilt of putting my partner at risk all these years… it’s all nearly unbearable. I can’t sleep. I can’t focus on my work.

Through everything, my partner has been so wonderful though… supportive, upbeat, non-judgmental. I don’t deserve him. I imagined I might lose him and everything.

Of course he immediately went in to our doctor to be tested. Expected the results in a week or so, but the doctor called the very next day at 8:30pm… I was sitting there having a heart attack while they talked for a minute or two. His test was negative. Finally a little good news. Great news actually. Although I can’t understand how it’s possible. How can we have unprotected sex for 16 years… me 80% top… and not transmit the virus. Meanwhile I get infected while thinking I’m being so vigilantly careful. I’m grateful though… I don’t know if I could live with myself if I gave it to him.

Trying to move forward. I got my initial labs… CD4 377/15% and VL 110,000. I guess it could be worse. I feel fine (physically if not mentally) but getting very sleep deprived. My dr prescribed ambien which helps me get to sleep, but like clockwork I wake up at 3am, sweaty, and just lay there worrying about everything. Sometimes I get back to sleep, sometimes not.
I have an appointment with an ID/HIV specialist but couldn’t get in until after thanksgiving. I’m anxious to get started on meds, and hopefully the night sweats will go away. They’re really annoying. But I’m worried about side effects, especially insomnia which I know will just kill me as can’t function when I’m sleep deprived.

And then there’s our sex life. Even after 16 years it was still good… though the frequency may have dropped off a bit, LOL. Now this has just killed it. In my head, sex and HIV are linked and I can’t even get an erection. I know it’s only been a few weeks, so maybe I can get to a better place. He’s been very patient and compassionate. More than I deserve. But I want him to be satisfied and I wonder if we can ever have a normal sex live ever again. Another thing for me to worry about.

Sorry for the long posting, but thanks for reading.

--John

Jeff G · « **Reply #1 on:** November 24, 2014, 11:39:26 am »

Welcome o the forums . Was your diagnosis confirmed with a western blot ?

ColoradoSkiFanatic · « **Reply #2 on:** November 24, 2014, 11:52:03 am »

Hi Jeff. Yes I believe it was western blot, although I have no idea what that means

I had a second test to confirm when my dr did all the rest of the blood work. No hep b or c, and never had any other STDs. Just my luck that the only thing I ever got was the big one. Still struggling to understand that.

Jeff G · « **Reply #3 on:** November 24, 2014, 11:55:13 am »

How you became HIV positive is beside the point at this stage of the game . Welcome and hope to hear more from you .

Almost2late · « **Reply #4 on:** November 24, 2014, 12:05:45 pm »

Hi Colorado, welcome in here... HIV doesn't care who you are, its an equal opportunity virus... sorry about your diagnoses but your numbers aren't too bad and once your on the meds the viral load will shrink and stop causing havoc to immune system and help your cd4's recover to even better numbers

... You'll adjust to your dx and live a next to normal life... Best of luck and try and relax till your doctors appointment

ColoradoSkiFanatic · « **Reply #5 on:** November 24, 2014, 12:18:27 pm »

Hi Jeff. I know you are right. The past is irrelevant and I have to simply look forward. My partner has been telling me the same thing... I'm lucky to have him. But it is in my nature to obsess about things I have no control over. I just have to get over it.

Also struggling with disclosure. Our daughter is home for thanksgiving break, and I must tell her at some point. I don't want it to be a burden though... finals week coming up. I think I will tell her at the beginning of Christmas break when she'll have plenty of down time. And also I should know more about the state of my health and what lies ahead.

ColoradoSkiFanatic · « **Reply #6 on:** November 24, 2014, 12:24:29 pm »

Thank you almost2late. Relaxing is what I'm trying to focus on. And also trying to focus on the good news... partner is negative, and at least now I know and I can deal with it. Plus, I'm looking out the window (in Vail, CO) and the snow is coming down in buckets.

Almost2late · « **Reply #7 on:** November 24, 2014, 12:52:37 pm »

Quote from: Almost2late on November 24, 2014, 12:05:45 pm

You'll adjust to your dx and live a next to normal life

Correction, normal life

Quote from: ColoradoSkiFanatic on November 24, 2014, 12:24:29 pm

Thank you almost2late. Relaxing is what I'm trying to focus on. And also trying to focus on the good news... partner is negative, and at least now I know and I can deal with it. Plus, I'm looking out the window (in Vail, CO) and the snow is coming down in buckets.

Got all my offspring at home also and looking forward to a lovely week

... Yeah, I miss the snow.

Cinnamon Dalia · « **Reply #8 on:** November 24, 2014, 01:53:28 pm »

Hello, John. I feel you, it's confusing and terrifying at first. I tested positive less than three months ago, so I am new at this, too.

I agree with Jeff, though, it doesn't really matter how you got it and I also agree with almost2late, you can have a normal life. You will just have to be more careful about your health and add discipline to the mix and you will be just fine.

Since I was diagnosed, I've talked to people who have been HIV+ for 20, 30 years and since they have taken care of themselves, they live a perfectly normal life. I think we all have been exposed to the prejudice and myths of being HIV+, but once you realize your life is not going to change and you will be just fine if you take care of yourself, really... everything gets better. almost2late is right, once you start treatment and taking care of yourself, your cd4 levels will get better and the VL will decrease.

As I said, I'm new here, but reading some of the stories and sharing with the members has helped me.

Feel free to come here as often as you want and vent, we're all here to help each other.

Really, don't take my word for it. You will see for yourself: you will be fine

mecch · « **Reply #9 on:** November 24, 2014, 03:03:55 pm »

Numbers aren't so bad. You will have to take your time and reconfigure and reconstuct things like your mojo, self-respect, calm, immune system. Its all doable. It will all happen.

You are not going to get sicker and you are certainly going to benefit from the great molecules we have today. And a weird bonus is if you had tested positive 15 years ago the molecules were a bit less user friendly, so there's that.

I dont understand your incredulity about how you could be positive for years without knowing it. Its simply because you decided not to test for 16 years! Water under the bridge but maybe you should assume that choice. You weren't living under a rock. A lot of gay guys get tested regularly year after year. Even those in faithful relationships.

Your bf won the crap shoot (stranger things have happened) so count your blessings.

Tonny2 · « **Reply #10 on:** November 24, 2014, 09:13:51 pm »

Quote from: ColoradoSkiFanatic on November 24, 2014, 11:26:45 am

Hi all.

First of all thanks to everyone for contributing to these forums. It’s helpful to know that I’m not alone and there are such compassionate people out there willing to help.
ojo welcome Colorado....I'm sorry you are feeling this way, is natural, all of us felt the same way when first dx'd....you'll be ok until you see you ID doctor and start treatment, you will start to feel better and relax....you do deserve your parten, OKG, sfter 16 years together, you two have done something right, especially with your daughter, so, please, do not say he doesn't deserve you...now it is time forboth of you, to fight this bug, new meds, no toxic like the older drugs....start making a list about all the question you may have, so the doctor will answer them....you TWO are going to be fine...try ambien cr to help you sleep, good luck, welcome again....hugs ojo

Poppy33 · « **Reply #11 on:** November 24, 2014, 09:23:40 pm »

Hi,
I also have a partner that I feel I don't deserve. He has been great. Your #'s are very similar to mine when I was dx which was in June 2014. I salso was worried about beginning med for fear of side effects. I gotta tell you, all the anxiety that led up to me putting that pill in my mouth was a waste of time. It took me three weeks to get up the courage to do it. Like I said it was a waste of time. Almost NO side effects. I had a headache for a few weeks and that was the worst of it. My #'s change dramatically. My CD 4 jumped to a 875 in three weeks and my VL dropped to 50. Although every little thing I feel now I attribute to the meds and doing well. I wish you All the best.

ColoradoSkiFanatic · « **Reply #12 on:** November 25, 2014, 02:06:50 pm »

Thank you Cinnamon and Poppy33 for your kind words. I'm feeling a little more relaxed, and it helps to know there are so many people living normally.

And Mecch, you are exactly right... I have to own up to my failure to get tested for so long, regardless of any rationalizations. It was stupid, and irresponsible. It's a horrible thing that I have to live with. Some will judge my actions, and rightly so, but probably no more harshly than I judge myself. My partner keeps telling me to stop beating myself up and focus on moving forward, and on my health. He is a special man and I'm lucky to have him.

I don't exactly feel lucky right now, but I know I'm very fortunate in many ways... to be relatively healthy after so long, and to have somehow avoided infecting my partner. And to benefit from the amazing advances in treatment options.

mecch · « **Reply #13 on:** November 25, 2014, 05:02:32 pm »

Jeez don't beat yourself up after the fact. Most of us choose complacency fairly often in life. Should of could of would of, right?

You are feeling shame and a bit dirty if I read between the lines but its just a click in your mind and that will pass. Your boyfriend isn't a saint and you are not guilty of anything its just life and you are two good people dealing with events.

Tonny2 · « **Reply #14 on:** November 25, 2014, 08:53:27 pm »

Quote from: ColoradoSkiFanatic on November 25, 2014, 02:06:50 pm

Thank you Cinnamon and Poppy33 for your kind words. I'm feeling a little more relaxed, and it helps to know there are so many people living normally.

And Mecch, you are exactly right... I have to own up to my failure to get tested for so long, regardless of any rationalizations. It was stupid, and irresponsible. It's a horrible thing that I have to live with. Some will judge my actions, and rightly so, but probably no more harshly than I judge myself. My partner keeps telling me to stop beating myself up and focus on moving forward, and on my health. He is a special man and I'm lucky to have him.

I don't exactly feel lucky right now, but I know I'm very fortunate in many ways... to be relatively healthy after so long, and to have somehow avoided infecting my partner. And to benefit from the amazing advances in treatment options.

ojo Hi Colorado...your partner is right, you have to focous first on your health, and treatment, right now is the most important thing you can do right now, I wish you luck....hugs ojo

ColoradoSkiFanatic · « **Reply #15 on:** December 17, 2014, 09:41:29 am »

Hey everyone. It's been several weeks now since being diagnosed and my outlook has been improving. My partner continues to be a rock for me to lean on, and we're having sex again, woo hoo! Getting reacquainted with Mr Condom, but very happy I can forget about HIV for a few moments and just enjoy the intimacy. At first it was quite a mood killer for me.

Met my new ID specialist and I'm very comfortable with him. Been treating HIV for decades, very compassionate and thorough... we talked for nearly an hour. Still didn't have the correct genotype results, so I gave another gallon of blood and I've got another appointment this week to discuss treatment. He said there was no particular urgency... in fact the whole thing felt very routine, which is actually reassuring. I am looking forward to starting meds though... i'm still having some lingering symptoms, night sweats (though much less severe than last month) and mouth sores that come and go.

I did have a question about where to get meds... my insurance seems to be pretty unrestricted, so I could go to a retail pharmacy in network or go with mail order through Medco. On the Medco website they have pricing tools, and I checked some of the popular medications (stribild and complera) and the price for retail pharmacy was literally 3x mail order. Not sure if that's really accurate... they might be overstating the retail price just to get your use the mail order option. Anyway, I'm curious if people have an opinion about mail order, and if anyone has had experience with Medco specificaly. Seems more convenient as I can get a 3mo supply vs only 1mo retail.

I'm on a high deductible insurance plan that includes my partner and our daughter (plug for Intel Corp: they have incredible same-sex partner and family benefits) so I pay 100% of expenses out of a pre-tax account until the deductible is met. We never get close to the out of pocket max, but we certainly will now

So my cost will be the same either way... but if it's really 3x difference, I feel like I should go with the cheaper option. No reason to waste money just because someone else is paying.

Thanks for reading.

AusShep · « **Reply #16 on:** December 17, 2014, 08:52:21 pm »

Glad to see you're moving forward and everything seems to be going ok.

I've used both mail order and local chain, never had a problem with either. Make sure to look up the copay assistance card for the med(s) you're prescribed. Those can knock $300 a month off of your costs until you hit your deductible.

Also, if you're in your open enrollment period, it may be a good time to switch to a lower out of pocket max/deductible plan for the new year.

ColoradoSkiFanatic · « **Reply #17 on:** December 21, 2014, 12:04:44 pm »

Hey AusShep. Thanks, yes I'm moving forward and definitely feeling better most of the time. Still have dark moments, going through all the emotions all over again... mostly disappointed and angry with myself, but that's getting better. Very thankful for the support from my partner, as well as the warmth and compassion I feel from people on this forum.

Met with ID specialist again... tests show no resistance, so I should be easy to treat. Survey says Stribild. Seems like a lot of people here are on it, and doing well so I"m optimistic. Going to try the mail order option since that is dramatically less expensive. I did look into switching insurance during open enrollment, which happened to coincide my diagnosis... turns out the high deductible plan is still the best way to go. Total out of pocket is about the same as the traditional plan since the premiums are so much less... $0 employee contribution even for a family of 3, vs a couple thousand on the traditional plan. Plus I pay everything out of a pretax Health Savings Account, and I don't lose any balance at the end of the year like FSA's.

Time to make this virus my bitch!

zach · « **Reply #18 on:** December 21, 2014, 12:07:28 pm »

Quote from: ColoradoSkiFanatic on December 21, 2014, 12:04:44 pm

Time to make this virus my bitch!

^^ love this

ColoradoSkiFanatic · « **Reply #19 on:** January 23, 2015, 11:23:07 am »

Hey folks,

Just thought I'd post an update if anyone is interested...

Overall, things are way better. A little over 2 weeks now on Stribild, and no side effects whatsoever... no sharts, no indigestion, no weird dreams. Nothing. For many weeks I had some lingering symptoms, cough, congestion, sore throat, night sweats... all gone fairly abruptly. I had been having trouble sleeping... waking up sweaty then mind racing, not able to get back to sleep. Last couple weeks, my sleep has been great... most nights I don't wake up at all, but if I do, I'm back to sleep right away. What a relief that is.

Next week I'll get some new labs done... will be interesting to see where I stand.

We've been skiing several times over the last several weeks, and each time it has really wiped me out, and aggravated my respiratory symptoms... probably should have taken it easy, but I just can't do it. Now that I'm feeling so much better I'm looking forward to going up this weekend to see how I do. We'll probably snowboard on Saturday... 2 weeks ago I took a beginner lesson with my partner, our daughter and her boyfriend... been skiing for 25 years, but first time on a snowboard. It was exhausting but really fun.

My mental state is much improved. I'm moving on. I'm taking all the bad feelings... shame, guilt, regret, etc., putting them in a bag, and kicking it down the stairs. Drowning them in the bathtub.

I'm starting new things in my life, mostly small, but reminders that I'm not stuck in a rut... learning to snowboard, starting a new book, and learning Claire du Lune on the piano (I know, overplayed, corny, but fuck it, it's my life).

I'm not letting this virus suck the joy out of my life. It doesn't own me.

Tonny2 · « **Reply #20 on:** January 23, 2015, 01:10:34 pm »

ojo Hi Colorado, good to hear that, life goes on...congratulations...hugs ojo

scooter24 · « **Reply #21 on:** January 23, 2015, 08:39:39 pm »

Snowboarding is awesome!!!! Don't forget your wrist guards! I've been down a bit since my diagnosis and decided that I needed to go hit the slopes. Looking forward to a week in Whistler. A week outside should boost my mood. Stribild is awesome. It maybe gave me some gas but that was it.

ColoradoSkiFanatic · « **Reply #22 on:** January 24, 2015, 05:16:07 pm »

Hey Scooter. Day 2 on the board went pretty well... 2 hours on the bunny hill, then gradutated to some blues. Humbling to be a beginner when I've been skiing for 30 years. Wrist guards sound like a great idea!

Have a great time at Whistler... would love to try it some day, but when you live in Colorado it's hard to go anywhere else to ski!

Didn't notice any increase in gas on the stribild, but there was plenty before so I probably wouldn't know

ColoradoSkiFanatic · « **Reply #23 on:** February 09, 2015, 11:35:29 pm »

Well, I got my first labs back today after ingesting 28 stribild tabs:

Prior to treatment: VL 110,000 Cd4 370 14.5%
Feb 9, 2015: VL 240 Cd4 675 21%

I just have one thing to say to this HIV inside me: Party's over fuckers!

The rest of my labs look just fine... kidneys, liver, etc etc, all normal. No side effects. This stuff is amazing.

It's been a journey these last few months coming to terms with this, but I realize how fortunate I am in so many ways. Things could have been so much worse having carried this around for years without knowledge or treatment.

I know many have not been so lucky, so I'm not going to sit here and feel sorry for myself. I'll get past this, live my life, and make damn sure what's left of the virus inside me goes no further.

scooter24 · « **Reply #24 on:** February 10, 2015, 12:21:35 am »

I'm happy to hear the good news with the boarding and your new labs!

"Party's over fuckers!" Love it!!!

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